the life, times and ramblings of jaythenerdkid. probably not safe for children.

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How to save a life

My grandfather died of leukaemia – at least, that’s what they think it was. My mother lost him when she was just a teenager. I’ve asked her, and she says she still misses him constantly, though the pain has dulled somewhat over time. When I was little, she often wore a gold four-leaf clover medallion that he’d bought her – a little piece of him that she carried with her always.

My cousin was diagnosed with lymphoma two years ago. While the cancer is now in remission, she had to undergo gruelling therapy, losing her hair in the process. Every cough and cold she gets is now treated with suspicion – she never knows which seemingly minor illness could be a sign that the cancer has returned. She’s younger than me, with so much life left to live, but she will spend the next few years fearful of a disease that haunts her even though it is supposedly gone.

My uncle died of cancer a few months ago. He was a warm, loving, compassionate man. It happened so quickly that I never got a chance to say goodbye to him – one minute, he was alive, and the next, the cancer had spread throughout his body and he was on life support. He passed away shortly afterwards, leaving behind a loving wife and four devoted children who were devastated by the loss. I wish every day that I’d talked to him more while he was alive.

My partner’s grandmother died of cancer a few years ago. She raised him while both his parents worked and was more dear to him than anyone else in the world. They discovered her cancer too late – by the time they found it, there was nothing they could do. My partner still cries sometimes, the loss still raw. He misses her so much. By extension, I miss the woman who loved him so dearly, and whom he loved. I wish I’d been able to meet her.

Cancer is a fearsome thing. It takes too many people too soon. Finding a cure for it is like chasing moonbeams – there are so many forms of cancer, so many genetic mutations that can cause it, that a single cure is impossible, and even cures for the most common kinds seem unattainable at times. What we can do – what we are doing – is learning how to catch it before it becomes too deadly to stop, so that those afflicted have a chance to survive. Better still, we can test people to see if they’re at risk before they ever get sick, giving them options for health management that might potentially save them years of pain, suffering and gruelling medical treatments.

But that testing is expensive. It’s expensive because of greedy men who wish to profit from the sick. Patent laws were never designed for a situation in which a company might try to patent the discovery of a gene – material that is in every living human being. The laws we have now were not designed with such an eventuality in mind. But as it is, gene patenting makes potentially life-saving testing prohibitively expensive.

A simple test can determine whether or not a woman has the potentially deadly BRCA-1 or BRCA-2 genes – genes strongly associated with familial breast cancer. Armed with this information, there are a slew of options available – preventative mastectomies and hysterectomies, for example. Further research may unearth new ways of preventing these cancers – which are deadly in many cases – from claiming the lives of women of all ages. That this test is too expensive for most women is not just unfortunate – it’s inhumane.

September 20th is Bright Pink Lipstick Day. I wore bright pink as part of a campaign to raise awareness of breast and ovarian cancer (the former of which can sometimes occur in cis men and trans* women as well). I wore it as a memorial to the people I’ve lost to cancer – family, friends, loved ones – and as a promise to those who are fighting the disease that they are not alone. Given the right resources and released from the constraints of money-hungry companies seeking to profit from peoples’ suffering, we could find new ways of treating cancer that are less taxing on the body, or even new ways of detecting cancer risk factors before the disease starts and spreads. We could save not only women at risk of breast and ovarian cancer, but people like my uncle, my cousin, my grandfather, my partner’s grandmother. We could transform cancer from an ominous spectre into something manageable, something we can fight.

We’re making progress. Even now, research is being done into gene therapies that could completely change the way we fight cancer. No more chemotherapy or toxic radiation, no more invasive surgeries, no more mastectomies and hysterectomies on women who find themselves feeling stripped bare and lesser afterward. But things need to change. Gene patenting is being challenged in courts around the world as we speak. Movements have begun to make gene testing more affordable, so that young women around the world can have access to information that will help them make considered choices about their health. This needs to continue. It needs to get bigger. More of us need to care more strongly.

The world has lost too many people to cancer already. One day, we might not need to lose any more. I hope I live to see a world in which that dream is realised.